Unmet Needs

Improper Social Care Assessments for Older People in England

 

Summary

[They] just came in with an agenda of cutting my 15 hours per week to 6.5. They announced it. They told me ‘We are not there to give you more, but we are going to cut it.’ They had worked out that that was what I needed [before they arrived].
—Mary Redman, 76, December 2017

Older people in England like Mary Redman can face considerable challenges in accessing the social services which they need to live independent, dignified lives, and to which they are entitled. In interviews with Human Rights Watch in 2017 and 2018, older people expressed concerns with how local officials determined their eligibility for social support. Such services include in-home assistance such as preparing meals, dressing, and bathing. In some cases, older people told Human Rights Watch that they were denied crucial services or had services significantly reduced, causing their health and wellbeing to decline. 

Some of those interviewed said that assessors appeared not to understand their disabilities and social care needs. In other cases, before beginning an assessment, assessors announced that services would be cut regardless of an individual’s actual need.

Under England’s Care Act 2014, any individual who meets financial and needs criteria is entitled to government-supported social support, known as social care. These services aim to promote wellbeing and independence, in addition to health and safety, by “supporting people to live as independently as possible, for as long as possible.”

Based on interviews with 104 people, this report documents improper assessments for individual older people’s social care in England, and the lack of oversight from the national government, which is responsible for implementation of the Care Act. The report focuses on England, as each nation in the United Kingdom has its own social care system. According to the UK Office for National Statistics, the number of people in England aged 65 and over is projected to increase by over 20 percent over the next 10 years.

Despite working with the Care and Support Alliance, which represents over 80 of Britain’s leading charities campaigning for a properly funded care system, requests to the British Association of Social Workers, and other extensive outreach, Human Rights Watch was not able to interview social workers or assessors for this report. 

The large number of complaints filed with the UK’s Local Government and Social Care Ombudsman regarding social care assessments suggests serious concerns with assessments and mechanisms to ensure their quality. The Ombudsman’s 2018 annual report, released in November 2018, documented a 140 percent increase in social care complaints over the eight-year period since 2010 and indicated that social care assessments are now among “the biggest areas of complaint.” The report noted that the number of complaints indicated “problems with whole systems and policies,” rather than “one-off mistakes.” The Ombudsman accepts complaints about local government councils and all adult social care providers, including home care agencies.

Day-to-day responsibility for providing social care services in England rests primarily with local authorities. Social care assessments often have significant impact on older people’s health, wellbeing, and independence because they are the gateway to services and supports for independent living. Yet no central government agency monitors assessments for social care services. Local authorities make decisions about care without any outside oversight. This puts the onus on individuals who may be going without needed supports to challenge their assessment with the local authority, bring litigation or file a complaint with the ombudsman’s office.

While some of those Human Rights Watch interviewed were able to bring an appeal and get the social care to which they are entitled, the process often led to delays in receiving services and many described facing physical, psychological, and financial hardships as a result. The decision to reduce support services became effective even before individuals had the chance to appeal.

Social care is funded by a mix of local taxation (notably council tax) and general central government funding allocated to local authorities. Central government funding to local authorities has been cut in recent years. According to the UK National Audit Office, the body charged with scrutinizing public spending for Parliament, the funding local governments receive from the central government to deliver social care and other services has fallen by almost half between 2010-11 and 2017-18. The funding reductions are part of austerity measures by the central government to cut spending and increase taxes following the global 2008 financial crisis. In a 2017 study by the Care and Support Alliance, which represents over 80 of Britain’s leading charities campaigning for a properly funded care system, social workers and others who conduct needs assessments reported they faced pressure from managers and officials responsible for funding decisions to reduce social care costs.

The UK government has obligations under domestic law in the Care Act 2014 and the Human Rights Act, and under international law to ensure the rights to live independently in the community, to health, and to private and family life. The UK government should ensure that older people receive the support they need and are entitled to by regularly monitoring social care assessments to ensure accuracy and fairness, and that services continue during appeals. 

 

Methodology

This report is based on 104 individual in-person and telephone interviews. Human Rights Watch interviewed 27 older people between the ages of 58 and 94 and 20 family carers in England between September 2017 and November 2018, in 11 local government authorities: Tower Hamlets, Cumbria, Bournemouth, North Yorkshire, Hertfordshire, South Derbyshire, Essex, Barking and Dagenham, Salford, Dorset, and Surrey. Wales, Scotland and Northern Ireland have their own social care systems and fall outside the scope of this research. Based on requests for confidentiality, Human Rights Watch has used pseudonyms for some interviewees. Pseudonyms are indicated by a name in quotation marks.

Human Rights Watch also interviewed 51 representatives of nongovernmental organizations, known in the UK as charities, as well as lawyers, service providers, academics, policy experts, staff from the National Health Service, Clinical Commissioning Group staff responsible for planning local health care, and current and former local government staff. We also conducted group interviews arranged by partner organizations in supported housing accommodations and community centers in East London, Bournemouth and Poole.

Despite working with the Care and Support Alliance, which represents over 80 of Britain’s leading charities campaigning for a properly funded care system, requests to the British Association of Social Workers, and other extensive outreach, Human Rights Watch was not able to interview social workers or assessors for this report. 

We sent letters to the 11 local governments where we conducted research, as well as to the Department of Health and Social Care, and the Ministry of Housing, Communities and Local Government in England, requesting answers to questions related to the findings of this report. Three local authorities, Dorset County Council, North Yorkshire County Council, and the London Borough of Barking & Dagenham responded to our questions. Their responses are in Annex 1. The other local government authorities and the ministries did not respond.

 

Background on Social Care in England

Local government authorities in England are required by the 2014 Care Act to carry out needs assessments “for any adult with an appearance of need for care and support...”[1] These services aim to promote wellbeing and independence, in addition to health and safety, by “supporting people to live as independently as possible, for as long as possible.”[2]  Assessments are typically carried out by a social worker employed by a local government authority. Under the Care Act, all local authorities must use the same eligibility standards in social care needs assessments and must fund at least part of an individual’s social care support if a person has less than £23,250 (approximately US$29,415) in savings and assets. England has 152 local authorities, all of which have social care responsibilities.

However, some research has found that not all people may be getting the care to which they are entitled. According to 2018 research published by Age UK, a nongovernmental

organization advocating on behalf of older people, 1.4 million older people in England are living with unmet needs for social care.[3] A July 2017 longitudinal survey (repeating surveys of the same variables over time) by Ipsos MORI, a market research company in the UK, found that 73 percent of those qualifying for care under the Care Act do not receive services for at least some of their needs.[4] According to Age UK, unmet need for support for vital daily activities among older people in England has increased by 48 percent since 2010.[5]

According to experts at Age UK and The Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK, when assessments do not accurately recognize a person’s support needs, or those needs otherwise go unmet, there can be increased pressure on England’s overstretched National Health Service to fill the gap.[6] The absence of social care can lead to older people being hospitalized and lengthen stays even after becoming medically fit for discharge.

 

The Context of Social Care Budgeting

According to some expert reports, the reduction in social care for older people in the UK appears to be linked to financial considerations, including fewer resources available at the local level. For example, the Association of Directors of Adult Social Services, a membership body of the directors of adult social care at the local government level in England, reported in its 2018 budget survey that “75 percent of directors reported that reducing the number of people in receipt of care is important or very important for them to achieve necessary savings.” For this survey, directors were asked about levels of confidence in being able to meet specific duties in the coming year. Only 34 percent were fully confident that they would be able to meet their obligations under the Care Act and other regulations.[7]

In 2016, the Chief Executive of the Care Quality Commission (CQC), the independent regulator of all health and social care services in England, warned that adult social care in England was “approaching a tipping point,” noting that “increased need” was colliding with “reduced access.”[8] In 2017, [CQC] warned that “the entire health and social care system is at full stretch” and that what was needed was “a long-term sustainable solution for the future funding and quality of adult social care.”[9] That same year, three prominent think tanks warned that social care would be facing a £2.5 billion funding gap for the year 2019-20.[10]

A day care center employee who has been working at the same London center for more than 11 years described increasing demand for services at his center for people losing social care at home. Adult social day care often provides social care supports, social activities, meals, and some health-related services. "Now, decisions are based on finances, not needs. About five years ago, we started seeing people with higher and higher levels of need. We’re getting a lot of people [referred] to us, with loads of disabilities … we’ve always got referrals, but now [demand is so high] we can’t even pick up the phone."[11]

 

Problems with Older People’s Social Care Assessments

Mary Redman

Mary Redman, 76, lives in a small town near London, has osteoarthritis and depression and had benefitted from social care since she was in her 30s to support her to shop, attend doctors’ appointments, and participate in community groups, among other activities. She told Human Rights Watch that during a 2016 assessment, the assessors told her they would cut her services before even assessing her level of need. She said the uncertainty of appealing the assessment decision compelled her assistant to look for other work and contributed to depression, causing her significant hardship. She explained:

[They] just came in with an agenda of cutting my 15 hours per week to 6.5. They announced it. They told me ‘We are not there to give you more, but we are going to cut it.’ They had worked out that that was what I needed [before they arrived].[12]

In addition to this announcement, Redman said her assessment contained stark inaccuracies. Although she has difficulty gripping and has used a walking frame [walker] for many years, the assessment report stated that Redman carried a heavy tray across her kitchen, which she said never happened. Redman successfully challenged the assessment, yet the process took a year and led her personal assistant of 30 years to quit and look for other work:

It has ended up with me losing one of my most treasured friends, who was my personal assistant. [She] helped around the house. [Osteoarthritis] affects hands. I can’t grip, and it’s painful, also in my spine and feet. She did light housework. We would go shopping one day a week to stock up. She would go with me to hospital appointments, or other things I needed help accessing … After the start of this review, she was so uncertain as to whether she would have a job at the end of the review that she gave her notice.
It was all a battle to appeal [the assessment]. The effect on me if I don’t get out. The effect on me with keeping my house clean. Even the effect on me with keeping myself clean. I suppose you might call it depression …
I tend to get infections in my feet more often [after foot care was cut]. I hadn’t realized that it was an infection until I collapsed and took an ambulance to the hospital.[13]

Redman returned home from the hospital and was successful in her appeal.

“Barbara,” the director of a social care program in London for more than 20 years, described a similar situation during a 2012 assessment of her mother, who had advanced dementia:

The social workers [with the local authority] did that assessment. They came in and said [her care] was being reduced. The assessment was supposed to be about my mum’s needs, and bespoke. With [the local authority’s] cuts, they were one-size-fits-all.[14]

Joy Watson

Joy Watson, 59, who lives outside Manchester, was diagnosed with dementia in 2013. The loss of services following a social care reassessment resulted in serious hardship while Watson appealed. Her appeal did not fully reinstate her services, so she pursued her case in court. She told us through tears about losing funding for her carer and support worker after what she believed to be an incorrect assessment in 2016:

Right from the onset, I realized that the person doing the assessment didn’t know anything about dementia. She was more [occupational therapy] oriented. She was very keen to know whether I could dress myself or walk, but she didn’t take into account any of my dementia symptoms. My support worker [at that time] was trying to explain to her the problems I have with dementia. [But] her questions were geared to more typical [physical] things.
The worst thing was I lost all my benefits. I had had them [her support worker and her husband as a caregiver] for many years. I had personality disorder and depression. When I got diagnosed with dementia, I was worse! The day after I lost all my benefits, my husband lost his carer’s allowance.[15]

Watson appealed with the local government authority, but her original level of services was not restored. She appealed again, to a court, with the assistance of a lawyer specializing in public law and older people’s rights:

We took it to court … For seven months, my life went on hold. I was borrowing from people to pay bills, my son was paying our bills, and I didn’t know what our future was. [The court case was expected to take] three months, then six months, seven months …

Watson was successful in her legal appeal. Reflecting on her experience, she told us:

People who make these decisions, the professional people, I don’t think they realize what the consequences are for people with dementia. I don’t think they understand the effect it has, the uncertainty, the fear of the future.[16]

“Farhaz”

“Mohammed,” 27, told Human Rights Watch that his father, “Farhaz,” now 80, began receiving social care from his local authority in London when he was diagnosed with vascular dementia 15 years ago. At that time, he had services to help manage his incontinence, keep him active, and provide respite for his family caregivers. Mohammed, who lives with his father and his mother, described their recent struggle to maintain the services his father still receives; daily visits from a care worker for bathing and dressing and visits to a day center a few days per week:

We got letters from the local authority a few years ago, talking about changes to care packages [through assessments]. Our care worker [for Farhaz] … told us we should ask for the submission from the assessor before it is finalized and submitted because sometimes they delete things [we have said to show levels of need]. I kept a table of the things [my father would] say and do [that showed the degree of his dementia].
My father has hallucinations ... We [his family] have to watch him all the time now. He ate half of a tub of barrier cream [diaper cream]. Eighty percent of the time he is very quiet, and 20 percent of the time he is very aggressive. He spends the whole day looking at his hands, folding tissues.
[The assessor] was late, and she fell asleep three times. You know it’s a problem when you’re being really nice [in spite of these things] because I
was fearful she would say no [to continuing the service] … I didn’t feel [the draft assessment] was representative of what was said.[17]

The assessor concluded the written assessment claiming that Mohammed’s father’s needs were “non-intense, non-complex, routine and predictable.”[18] Acting on the advice of the care worker and information from Age UK, an older person’s advocacy group, Mohammed asked for the draft assessment before it was finalized and requested a reassessment by another assessor.  His father is fortunate: the reassessment found a higher level of requirements for support, which qualified him for specialized services from the National Health Service (NHS) Continuing Healthcare.[19]

 “Peter”

“Peter,” 61, had a brain injury following a stroke in 2003, which required six months of hospitalization. Since that time, he has limited mobility, uses a mobility scooter, and experiences severe anxiety. After his hospitalization, he spent years in homeless shelters, and moved into his current accessible home in East London in 2012. An assessment of his support needs originally provided him 1.5 hours of assistance per week to clean his house. During a 2017 reassessment, Peter asked for an additional hour per week, including to change and wash the sheets on his bed. The social worker conducting the assessment told him that he would actually get less and linked it to financial concerns. According to Peter, the social worker said she wouldn’t dare ask for that and that an extra hour was more than her job was worth. Peter said the social worker told him his care would be reduced from 1.5 hours to one hour due to the cuts in the funding of social care and said ‘we [the local authority] have basically got to cut back on everything.’[20]

Peter wrote a letter to his local government in May 2017, complaining about this cut in his services, but he had not received a response by late January 2018 when he spoke to Human Rights Watch.

“Martha”

“Julie” told Human Rights Watch that her mother, “Martha,” 65, was in a bus accident in March 2018 in a town east of London. Following the accident, Martha was incontinent and had so much back pain that she could not walk. Julie said the doctors sent her mother home from the hospital’s accident and emergency department that same day. Martha returned to the hospital the next day where a social services staff member conducted a social care assessment. Julie explained:

She came to my house. She was in excruciating pain, she couldn’t walk. She was leaking [urine] on my settee; she was in absolute agony. [The next day,] we went back to the hospital ... Social services did her [social care] assessment. They said she was medically fit to go home, [but that] she just couldn’t walk. She lives in a first floor flat, up two flights of stairs. They said, ‘She can just stay at yours, you have a downstairs toilet.’ Right now, she is sleeping on my settee …[21]

At the time of the interview in May 2018, Julie had been calling her own local authority and Martha’s local authority for additional support for her mother, without progress. She said, “With our social services, with the council, they’re telling us, ‘No.’” [22]

Jenny Bullen

Jenny Bullen, 67, of West Lancashire, cared for her mother who lived in another town for 10 years. Her mother had dementia and had experienced paranoia and psychoses for all her adult life. She passed away in 2014, at 89. Bullen told us that she struggled to get her mother’s local government authority’s social services to assess her support needs during the final year of her life.

[Assessors] would come and sit with us for maybe half an hour. They would look at my mum who seemed very calm. She was very socialized. She was having language problems, but she would say, ‘Oh yes, oh yes.’ She actually couldn’t tell her story.[23]

Eventually, the police found Bullen’s mother one morning after she had wandered around her town all night. Bullen asked the local authority for supervision at night for her mother. The local authority refused, saying that the only way her mother could have supervision at night would be for her to move into an institution and sell her flat to pay for it, or to pay for 24-hour in-home support herself. This refusal led Bullen’s mother to eventually be placed in an institution.  Bullen explained:

The 24-hour care was beyond my mum’s means, mine and my sister’s means. So, we had to find residential care for her. We just couldn’t trust that she knew how to keep herself safe in this flat. With the people who were assessing, it was like, ‘Well, this is the pot of money we’ve got.’
I tried to appeal, but mum actually died before that appeal came into fruition [in 2014]. … The local authority came back to me to say that we could have some extra money, because [mum] should have had some extra care [as I had appealed]. It wasn’t the money we wanted, it was the care![24]
 

Suspension of Services During Appeals

Currently, individuals can appeal needs assessments to their local authority, to the national Local Government and Social Care Ombudsman, or they can take their case directly to court.

As described above, people with whom Human Rights Watch spoke who did file an appeal regarding their social care assessment lost services very soon after an assessment. This left them without services they depended on, pending the outcome of an appeal. This can result in declines in health and well-being.

Dominic Carter, a Senior Policy Officer with the UK Alzheimer’s Society told Human Rights Watch that getting assessments correct is critical, because many face challenges in making appeals. “Lots of people living with dementia are living alone. Making a formal appeal can be too much, and they deteriorate because the [new] package [of care] is not right. Declines can be quick.”[26]

The Care Act is silent on the suspensive effect of an appeal. Department of Health guidance from 2006 states that “Decisions need to be made on a case-by-case basis, but there should generally be a presumption in favour of freezing, unless there is a good reason against it (for example, if it puts a service user at risk).”[27]

In responses to Human Rights Watch’s inquiries, two local authorities stated that they have the discretion to maintain services pending appeals or issue services pending an appeal but did not make clear the criteria they use for such decisions or how often they do continue to provide services. The Dorset County Council reported that it will continue services “as the as long as the original care plan fulfils the council's statutory duties to meet the person's needs.”[28] The North Yorkshire County Council said that managers “have the authority to continue services (if already in receipt) whilst a complaint is awaiting outcome” and that “a service would be provided pending the outcome, if one was not already in place, and if appropriate, and available within available resources.”[29]

The Department of Health and Social Care is currently developing a process for streamlined appeals, to be introduced by April 2020, as provided for in the Care Act.[30] As part of the reforms, the government should consider allowing services to continue to maintain individuals’ health and wellbeing during appeals. 

 

Lack of External Oversight of Social Care Assessments

In its 2017-2018 complaints report, released in November 2018, the Local Government and Social Care Ombudsman stated that assessments remain one of the biggest areas of complaint, and noted “a shift from one-off mistakes to problems with whole systems and policies, or procedures being incorrectly applied.”[31]

Social care assessments have huge relevance for the wellbeing and rights of those being assessed, yet there is currently a lack of sufficient oversight and monitoring of assessments to ensure consistent accuracy and objectivity. Older people’s rights advocates, staff of one local government agency, and staff of the Local Government Association, told Human Rights Watch that they were unaware of any system by which central government audits needs assessments to ensure they are being administered reliably.

The National Audit Office states clearly that:

The Department of Health & Social Care is responsible for health and adult social care policy in England. Local authorities commission social care and a small minority also provide care services. Local authorities do not have direct accountability to government .... .[32]

Human Rights Watch sent letters to 11 local government authorities requesting information on monitoring of social care needs assessments. The three local governments (Dorset County Council, North Yorkshire County Council, and London Borough of Barking & Dagenham) that responded indicated processes for reviewing social care needs assessments are conducted within each council’s own structures, and they were not aware of any systematic independent monitoring or monitoring of assessments by the central government.[33]

At time of writing we have not received responses from other local government authorities. We also contacted the Department of Health and Social Care and the Ministry of Housing, Communities and Local Government in England, requesting information on monitoring of social care needs assessments. We did not receive responses from them at the time of writing.

Local authorities submit reports to England’s Department of Health and Social Care on some aspects of their social care provision annually, such as how many people are living in nursing facilities, in residential care, and receiving short-term and long-term social care at home, in the Adult Social Care Outcomes Framework. The Department of Health and Social Care does not audit this information, nor does it use the information to improve local government authorities’ delivery of social care. In its 2018-2019 guidance for local authority reporting, it states: “The Government does not seek to performance manage councils in relation to any of the measures set out in this framework. Instead, the Adult Social Care Outcomes Framework (ASCOF) will inform and support improvement led by the sector itself, underpinned by strengthened transparency and local accountability.”[34]

Data reported to the Department of Health and Social Care may not always be accurate. A staff member at a local authority working on social care administration described the pressures she faces in reporting her local authority’s statistics on social care provision to the Department of Health and Social Care. During data compilation for an annual report for 2017, her manager asked her to overstate the number of people who had received short-term services had subsequently been deemed “healthy” and did not require a continuation of services:

… You have to take into account that none of this is audited … What I’m shocked at is that there is no auditing of our [social care] numbers … We’ve had pressure to change the figures [we report on social care]. Because it’s not audited, there’s a lot of making things look nicer.[35]
 

International Legal Standards

The Right to Health and to Family and Private Life

The International Covenant on Economic, Social and Cultural Rights (ICESCR), ratified by the United Kingdom but not yet incorporated into domestic law, guarantees the right of everyone to the enjoyment of the highest attainable standard of physical and mental health conducive to living a life in dignity, including for older persons. 

Like the ICESCR, the European Convention on Human Rights, ratified by the UK and incorporated into domestic law through the Human Rights Act 1998, guarantee the right to private and family life. European Court of Human Rights jurisprudence has determined that private life covers “a person’s physical and psychological integrity,” “personal development,” and “personal autonomy,” and more specifically is “considered relevant to complaints about public funding to facilitate the mobility and quality of life of disabled applicants.”[36] The court has also interpreted this right to protect people from the “disruption of home or family life” causing “stress and distress,” including when lack of financial support or community-based services would force older persons with disabilities out of their homes.[37]

The United Nations Committee on Economic, Social and Cultural Rights, which monitors implementation of the ICESCR, has called on governments to “implement measures especially for low-income families who wish to keep elderly people at home. This assistance should also be provided for persons living alone or elderly couples wishing to remain at home.”[38]

The UK is a party to the Council of Europe’s original European Social Charter of 1961, which requires it to respect a range of social and economic rights, including the right of everyone to health, to social and medical assistance, and the right to benefit from social welfare services.[39]

The UK has not ratified the Council of Europe’s Revised European Social Charter, adopted in 1996. Article 23 of that Charter, titled “the right of elderly persons to social protection” obliges parties to undertake or encourage measures to enable older people to remain full members of society for as long as possible, requiring that they should have …” adequate resources enabling them to lead a decent life and play an active part in public, social and cultural life;”[40] and to choose their lifestyle freely and to lead independent lives in their familiar surroundings for as long as they wish and are able, by means of “the health care and the services necessitated by their state[.]”[41]

The Right to Live Independently in the Community

Older people have the right to live independently in the community and to community-based services under the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which the UK ratified in 2009. Support for living independently can include: “access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation.” The right to live independently and be included in the community should not depend on the level of support a person needs.[42]

Many older people in need of social care have disabilities, defined by the CRPD as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[43]

In its October 2017 review of the UK, the UN Committee on the Rights of Persons with Disabilities expressed concern about changes in “policies and measures that affect the ability to live independently in the community,” and that “responsibility for supporting independent living has been transferred to the devolved administrations and local authorities without providing appropriate and earmarked budget allocation.”[44]

 

Recommendations

To the UK Government

  • Ensure that older people have access to the services they need to realize their rights to live independently in their communities with their rights to health and private and family life protected.
  • Establish a mechanism to monitor and evaluate social care needs assessments and the staff who conduct them to ensure consistency and equality nationally.
  • Ratify the Council of Europe’s Revised European Social Charter.

To the UK Parliament

  • The Health and Social Care Committee and the Housing, Communities and Local Government Committee of the House of Commons should examine the impact of austerity measures on local authority social care provision under the Care Act 2014.

To the Ministry of Housing, Communities and Local Government

  • Review successful appeals against initial social care needs assessments and collect data about the reasons assessments were identified as problematic; data should consider the age, gender, ethnicity, location, and place of residence of those assessed as well as the types of shortcomings in initial assessments; use this information to make corrections and improvements in the system with a goal of ensuring provision of services to which people are entitled and reducing the number of times individuals must appeal in order to secure social care services.
  • Direct local authorities to establish and document clearly the specific reasons to justify services being safely reduced or eliminated pending an individual’s appeal of an initial social care assessment and in all cases to strongly consider continuation of services pending appeals.

To the Department of Health and Social Care

  • Include, in the reform of social care appeals processes planned for 2020, the suspensive effect of appeals.
  • Execute a plan for the long-term stability and sustainability of the social care system in England to ensure that the human rights of older people are fully respected.

To Local Governments

  • Ensure the accuracy of needs assessments, including when there are not enough resources locally to meet those needs.
  • Document clearly the specific reasons to justify services being safely reduced or eliminated pending an individual’s appeal of an initial social care assessment and in all cases to strongly consider continuation of services pending appeals.
  • Ensure that individuals are fully informed of their rights and available options to appeal social care assessment decisions and provide reasonable accommodations to individuals who may require assistance in the appeals process.
 

Acknowledgments

This report was researched and written by Bethany Brown, Older Persons’ Rights researcher in the Disability Rights Division of Human Rights Watch. Jane Buchanan, deputy director of the Disability Rights Division, Diederik Lohman, director of the Health and Human Rights Division, and Benjamin Ward, deputy director of the Europe and Central Asia Division edited the report. Clive Baldwin, senior legal advisor, provided legal review, and Babatunde Olugboji, deputy program director, provided program review for Human Rights Watch. Cara Schulte, associate, Health and Human Rights Division, provided production assistance and support. Print production was coordinated by Jose Martinez, senior coordinator; and Fitzroy Hepkins, production manager.

Human Rights Watch thanks individuals who shared their personal stories, as well as officials, service providers, and experts who agreed to be interviewed. We also thank all the organizations that supported this work by facilitating interviews, and providing invaluable insight, including Dennis Reed of Silver Voices, Kirsty Woodard of Ageing Without Children, Jane Caldwell and the team of Age UK East London, Sally Copley and the team of the Alzheimer’s Society, and Rajbinder Johal and the team of Independent Age.

Human Rights Watch would like to thank the Samuel Centre for Social Connectedness for its partnership throughout this research. Social connectedness is a guiding theme in Human Rights Watch’s work for older people’s human rights. We would like to thank Eloise O’Carroll, Social Connectedness Fellow at the Samuel Centre for Social Connectedness, for her research assistance. And, we offer our deepest thanks to Kim Samuel for her unwavering belief in the power of social connectedness.

 

 

 

[2] Ibid.

[3] Age UK, “New Analysis Shows Number of Older People with Unmet Care Needs Soars to Record High,” July 9, 2018, https://www.ageuk.org.uk/latest-press/articles/2018/july-2018/new-analysis-shows-number-of-older-people-with-unmet-care-needs-soars-to-record-high/ (accessed December 14, 2018).  

[4] Ipsos MORI, “Unmet Need for Care Full Report,” July 2017, https://www.ipsos.com/sites/default/files/2017-07/unmet-need-for-care-full-report.pdf (accessed November 16, 2018).

[5] Age UK, “The Health and Care of Older People in England 2017,” February 2017, p. 29 https://www.ageuk.org.uk/documents/EN-GB/For-professionals/Research/The_Health_and_Care_of_Older_People_in_England_2016.pdf?dtrk=true (accessed June 28, 2018).

[6] Age UK, “New Analysis Shows Number of Older People with Unmet Care Needs Soars to Record High,” (calculating that delayed discharges from hospital due to social care not being in place costs the NHS £289,140,954 per year); and The Health Foundation, “Social Care Funding Options: How Much Will They Cost?”  May 2018 (finding that a failure to fund social care will create “additional costs for other public services, particularly the NHS.”).

[7] Association of Directors of Adult Social Services, “Budget Survey 2018,” p. 16 https://www.adass.org.uk/adass-budget-survey-2018 (accessed June 28, 2018).

[8] The Kings Fund, “The World’s Biggest Quango,” May 2018, https://www.kingsfund.org.uk/sites/default/files/2018-05/worlds_biggest_quango_ifg_may2017.pdf (accessed June 19, 2018), p. 77, referencing Care Quality Commission, “’Adult Social Care “Approaching Tipping Point,’ Warns Quality Regulator,” press release, October 13, 2018.

[9] The Kings Fund, “The World’s Biggest Quango,” p. 87, citing Care Quality Commission, “The State of Health Care and Adult Social Care in England: 2016/17: Summary,” 2017.

[10] The Kings Fund, “The World’s Biggest Quango,” p. 87, citing Nuffield Trust, “The Health Foundation and The King’s Fund (2017) The Autumn Budget: Joint statement on health and social care,” 2017. 

[11] Human Rights Watch interview with Joynul Hoque, outreach worker at day care center in London, January 22, 2018.

[12] Human Rights Watch Skype interview with Mary Redman, December 18, 2017.

[13] Ibid.

[14] Human Rights Watch interview with “Barbara,” London, January 18, 2018.

[15] Human Rights Watch telephone interview with Joy Watson, July 19, 2018.

[16] Ibid.

[17] Human Rights Watch interview with “Farhaz,” London, March 15, 2018.

[18] Decision Support Tool for Continuing Healthcare, received from “Farhaz” on May 7, 2018, on file with HRW.

[19] The National Health Service is England’s free-at-the-point-of-service health services for all, regardless of income. https://www.nhs.uk/using-the-nhs/about-the-nhs/principles-and-values/. Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. This is known as NHS continuing healthcare. https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/ (accessed December 19, 2018).

[20] Human Rights Watch interview with “Peter,” London, January 23, 2018.

[21] Human Rights Watch telephone interview with “Martha,” May 2, 2018.

[22] Ibid.

[23] Human Rights Watch telephone interview with Jenny Bullen, December 13, 2017.

[24] Ibid.

[26] Human Rights Watch telephone interview with Dominic Carter, Senior Policy Officer, UK Alzheimer’s Society, July 16, 2018.

[27] Department of Health, “Learning From Complaints Social Services Complaints Procedure for Adults,” 2006, para. 6.5, http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/assetRoot/04/13/77/86/04137786.pdf (accessed November 18, 2018).

[28] Letter from Michael Ford, Dorset County Council, to Human Rights Watch, October 29, 2019. Available at www.hrw.org.

[29] Letter from Christine Appleyard, North Yorkshire County Council, to Human Rights Watch, November 15, 2018. Available at www.hrw.org.

[30] House of Commons Library, “Briefing Paper, Social Care: Announcements delaying the introduction of funding reforms (including the cap) (England),” February 23, 2018, https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationprojections/compendium/subnationalpopulationprojectionssupplementaryanalysis/2014basedprojections/howthepopulationofenglandisprojectedtoage (accessed November 18, 2018).

[31] Local Government and Social Care Ombudsman, “Social care pressures reflected in Ombudsman’s annual review of complaints,” November 28, 2018,

https://www.lgo.org.uk/information-centre/news/2018/nov/social-care-pressures-reflected-in-ombudsman-s-annual-review-of-complaints (accessed November 30, 2018).

[32] National Audit Office, “Adult Social Care At A Glance,” July 2018, p. 6. https://www.nao.org.uk/wp-content/uploads/2018/07/Adult-social-care-at-a-glance.pdf (accessed November 30,2018).

[33] Letter from Michael Ford, Dorset County Council, to Human Rights Watch, October 29, 2019; Letter from Christine Appleyard, North Yorkshire County Council, to Human Rights Watch, November 15, 2018; Email from Stephan Leibrecht, London Borough of Barking & Dagenham, to Human Rights Watch, November 19, 2018. Available at www.hrw.org.

[34] Department of Health and Social Care, “The Adult Social Care Outcomes Framework 2018/19 Handbook of Definitions,” March 2018, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/687208/Final_ASCOF_handbook_of_definitions_2018-19_2.pdf (accessed November 16, 2018).

[35] Human Rights Watch telephone interview with “Elise,” January 9, 2018.

[36] European Court of Human Rights, McDonald v. The United Kingdom, judgment of 20 August 2014, paras. 46-47.

[37] European Court of Human Rights, Watts v. The United Kingdom, decision on the admissibility of application no. 53586/09, para. 97.

[38] UN Committee on Economic, Social and Cultural Rights, General Comment No. 6, The Economic, Social and Cultural Rights of Older Persons (1995), 8 December 1995, art. 10, para. 31.

[39] Council of Europe, European Social Charter, 18 October 1961, arts. 12, 13, and 14, https://rm.coe.int/168006b642.

[40] Council of Europe, European Social Charter (Revised), 3 March 1996, art. 23, https://rm.coe.int/168007cf93.

[41] Ibid.

[42] Convention on the Rights of Persons with Disabilities (CRPD), adopted 24 January 2007, G.A. res. A/RES/61/106, entered into force 3 May 2008, ratified by the United Kingdom of Great Britain and Northern Ireland on 8 June 2009, preamble.

[43] CRPD, art. 1.

[44] Concluding Observations on the initial report of the United Kingdom of Great Britain and Northern Ireland to the United Nations Committee on the Rights of Persons With Disabilities, October 3, 2017, para 44,  http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d%2fPPRiCAqhKb7yhspCUnZhK1jU66fLQJyHIkqMIT3RDaLiqzhH8tVNxhro6S657eVNwuqlzu0xvsQUehREyYEQD%2bldQaLP31QDpRclCKZKktydtAkeqhq77NLo1.